What changes have helped you feel more fulfilled as you navigate MG?
Have you made changes to your life since your MG diagnosis? What changes have helped you feel more fulfilled as you navigate MG?
I was diagnosed 17 years ago. It started with double vision after exercise, I went straight to the eye dr. Could not figure it out. Then went to my family dr. He recommend a neurologist who diagnosed me with MG.He started me on prednisone, things did not get better. My body started slumping, my neck wouldn't hold my head up. That neurologist sent me to a clinic with a neuro muscle dr., wow what a difference. Mestinon and high dose of prednisone was prescribed. There was a difference. I rested, I slowed down at home and at work. Walking wore me out. Eating wore me out, at this point my speech, swallowing, breathing you name it wore me down. I receive a magazine called Quest, it's articles on everything related to MDA. My husband read an article on MG, a new treatment they were trying on MG patients. We went to my Dr. and asked about this new treatment. I was approved by my insurance company and started my infusions of Rituxan, 4 infusions in 4 weeks. Wow what a difference, but it lasted 6 months. So I did the infusions again, they lasted 1 year. Then again 1 year ,then again but the insurance company denied me because the drug is so expensive. Finally a generic came out called Truxima and there is a company out there called Core that will help you pay for your drug treatment. Yippie, like I said it was very costly. I am know in remission, my longest of 3 years. I'm not saying I have no symptoms, but my days are so much better. No more prednisone, just mestinon 3 times daily 120 MG at a time. My breathing is so much better, swallowing, eating, walking is better. When I do, do too much my body will show me signs it's time to rest. And I do with out hesitation. I'm now 66 and if I've learned anything it is you have to be your own advikit and have a good neurologist team behind you
Hi Jodi, diagnosed in April 2021, I've had mestinon didn't work, I'm currently on Prednisolone 15mg daily, methotrexate 5 mg weekly, yes I have COPD, Rheumatoid arthritis and diabetes type 2. After speaking at length yesterday with my Neurologist, he also feels I may well have another neurological condition, and has requested an MRI on my head and spine. Lovely to hear from you.
Hi
just wanted to pop in to see how you have been doing these last couple months? Have you had any more appointments with your neurologist? Wishing you well. -Jessica (Team Member)
I just recently have been diagnosed I have Mg. This socks! I can't believe it. I'm 68. Was still working at a major mall in taylor, Michigan. I was lead engineer for 43 years. But now it's all come to a stop.i loved what I did. Fixing things!
Hello and welcome to our community. We are genuinely delighted to have you with us. We sincerely hope you find valuable support and insight from the information and experiences shared here. We understand how challenging it can be to receive an MG diagnosis and the overwhelming feelings of uncertainty that may accompany it. Have you found a specialist for MG or had luck scheduling an appointment?
- Jodi, Team Member
None, I've tried diet change, resting, I sleep at night restlessly, I sleep in the morning and afternoon. I get so tired just doing the smallest of things. My legs speak to me saying what on earth are you doing to me if I try to exercise take a walk
Hey there! It's really good to hear from you after such a long time. I'm genuinely sorry to hear you're unsatisfied with your quality of life while dealing with MG. We understand just how challenging and complex the issues surrounding MG can be. Please remind me when you were diagnosed and which treatments you've already tried. I'd like to understand what has worked for you, what hasn't, and what treatment you're currently on. Do you also have any other health conditions?
- Jodi, Team Member
